Common Variable Immunodeficiency Support Group
Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.
Hey everyone,
I am new on this site and am impressed with all the responses to the discussions, so I thought I'd start my own...
I had adult onset of CVID around the age of 18 and then it took another 6 years before a diagnoses was made. I struggled with chronic respiratory and sinus infections--and by chronic, I mean I had an 8 months bout of sinusitis and a year long lung infection. Antibiotics would make me feel okay but less than 24 hours of being off them I would be just as sick again! I was on antibiotics for almost 8 months straight and my digestive tract has not been the same since--and that was 2 years ago... And my gastrointestinal woes are pretty much unchanged, if anything worse.
I have been on IVIG for the past year and my chronic infections have subsided for the most part. I am not sure if it is all the antibiotics I have been on or what... I realize that IVIG does not help address the gastrointestinal issues come CVID patients can experience.
Does anyone else have digestive problems and CVID? My doctors have tested me for parasites and infections--all came back clean and yet half the time I have diarrhea or barely digested food coming out of me. I will bloat up and have cramps, etc. I have been tested for food allergies and been on elimination diets (to test for food allergy/sensitivity) and all of those came back clean too! The only irritant I have pinned down in alcohol--so I completely cut out booze--which helped initially but now I am back to where I was and have still not had a drop of liquor.
So I am thinking this might be IBS--not uncommon with CVID--or an infection that my doctors have not caught yet. Any suggestions or tests I should be getting done? Or perhaps foods that might be the culprit?
I am new on this site and am impressed with all the responses to the discussions, so I thought I'd start my own...
I had adult onset of CVID around the age of 18 and then it took another 6 years before a diagnoses was made. I struggled with chronic respiratory and sinus infections--and by chronic, I mean I had an 8 months bout of sinusitis and a year long lung infection. Antibiotics would make me feel okay but less than 24 hours of being off them I would be just as sick again! I was on antibiotics for almost 8 months straight and my digestive tract has not been the same since--and that was 2 years ago... And my gastrointestinal woes are pretty much unchanged, if anything worse.
I have been on IVIG for the past year and my chronic infections have subsided for the most part. I am not sure if it is all the antibiotics I have been on or what... I realize that IVIG does not help address the gastrointestinal issues come CVID patients can experience.
Does anyone else have digestive problems and CVID? My doctors have tested me for parasites and infections--all came back clean and yet half the time I have diarrhea or barely digested food coming out of me. I will bloat up and have cramps, etc. I have been tested for food allergies and been on elimination diets (to test for food allergy/sensitivity) and all of those came back clean too! The only irritant I have pinned down in alcohol--so I completely cut out booze--which helped initially but now I am back to where I was and have still not had a drop of liquor.
So I am thinking this might be IBS--not uncommon with CVID--or an infection that my doctors have not caught yet. Any suggestions or tests I should be getting done? Or perhaps foods that might be the culprit?
You take it just before your meal or snack. Mix with a hand whisk, 1 tsp of the powder or more, in a glas of H2O more if you if you like it thick. I like it thick. It has a pleasant plant flavour and reminds me of pudding!
Yes, SUGAR is really nasty, regarding inflammation. I take VERY little in my diet. a small piece of black chocolate every couple days as a treat and that is it. Even I limit fruits as they have fructose that gives me the shits too. No wheat in my diet and I do not eat processed food.
Interesting advice about the fermenting of the grains before you eat them! Thanks!
Thanks ELC 87
Much appreciated, your input!
Nutrition and cooking have always been two interests of mine. I am in university and have done nothing but learn how to research for the past few years, so I am pretty good at finding information and discerning between good/bad sources. Nutrition is a highly debatable subject and opinions often change--diet fads and etc.
Here is the link on fermented grains and phytase:
http://www.thenourishinggourmet.com/2010/09/digestibility-of-soaked-sprouted-and-fermented-grains.html
I just googled "Fermented grains" and variations on that. Researching anything always takes a while but I find just always as: who is writing this, how might they be bias, and what are their sources? If I am feeling really ambitious I just access academic journals through my university. Going to be sad when I graduate and lose access to all those research journals!
I don't eat much sugar and if I do, I try to use honey or molasses. At least those two are slightly beneficial in some sense.
Thanks!
Do you think this is the same? A LOT cheaper!
And np!
Our pharmacies sell OTC and Rx but not good probiotics. The healthfood stores have them in the fridge, mostly.
Thanks!